Big shout out to everyone fighting this disease with every determination they can muster to stay alive. It is not a walk in the park to live and thrive having this disease.
Being a regional governance advocate, it is necessary that Southeastern Nigerian states as well as other regions of the nation make distinct efforts towards creating awareness about this genetic based disease while also improving the quality of care for diagnosed patients.
The task of raising awareness for citizens to know their blood groups and genotype should be an advocacy that public spirited Nigerians should support voluntary community developments advocates to execute.
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Once it is established after a hemoglobin electrophoresis test that a child is of the AS, AC genotype, then such a person must be informed from a tender age that in other to not complicate their lives, that it would be suicidal for them to marry a partner of similar genotype.
We understand that some Medical Laboratory facilities with seemingly incompetent staff dispatch results that do not speak to the reality of their patients.
To avoid such mistakes especially if you do not have the resources to patronize standard and premium quality Laboratories, you can engage the services of a skilled phlebotomist to collect the client’s blood sample in different EDTA containers after which you can dispatch these samples to two or three different laboratories to ascertain their blood groups and genotypes.
At the end of the day, one of the Laboratory results would serve as the tie breaker especially when there are doubts.
We must acknowledge in this article that some incompetent medical professionals are the reason some people have found themselves having children who are diagnosed with sickle cell disease.
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One other unfortunate way to have a child who would suffer from sickle cell disease despite your being married to a man with hemoglobin genotype AA, as a woman with sickle cell trait carrier (AS, AC) is to have extramarital affair with a man whose hemoglobin genotype is either AS or AC.
As a woman with the AS or AC hemoglobin genotype, you must always be deliberate about the genotype of any man you wish to have a child with.
The truth remains that it takes so much to effectively live with sickle cell disease in Africa.
This is because of the routine need of blood for transfusion which often is not available, the need of resources with which to buy the necessary medications needed to stay healthy, nonetheless.
We must advocate for policies that makes it compulsory and if possible, criminalize it for intending couples not to have their hemoglobin electrophoresis done in accredited Laboratories before being wedded in court or church.
Read Also; TO LOVE AND TO PERISH, THE SICKLE CELL DISEASE CONUNDRUM. (I)
These medical reports from Medical Laboratories should be archived in the cloud with the aim of ease of access peradventure in the future, when some medicolegal issues arise as a result of an alleged issuing of wrong laboratory investigation report from a facility.
There should be well publicized far-reaching implications for any Medical Laboratory that misleads its clients by not offering genotype results of standard quality.
Always know that knowing your blood group which comprises of the ABO and Rhesus blood group types alongside your genotype is a duty you owe everyone in your space. This is what you can do to save them from self-destruction in the years to come.
“Love” would no longer matter when the implication of your wrong choice in choosing a partner with respect to genotype catches up with you and nothing also guarantees you a miracle of giving birth to kids without sickle cell disease as couples living with sickle cell trait.
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Non-Governmental organizations like Olive Sickle Cell Initiative with a national outlook to reducing drastically the scourge of this disease in kids by 2030 must be commended while more people can partner with such bodies or volunteer for them as their own way of giving back to the society.
Finally, our health maintenance organizations (HMO) or State-owned health insurance agencies like Anambra State Health Insurance Agency should partner with their vendors and volunteers, to massively create awareness about this sickle cell disease monster that is ravaging homes.
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They should also assist rural dwellers most especially, have their blood group and genotype investigations done in accredited Medical Laboratory facilities.
With reliable laboratory results, the chances of sickle cell trait carriers getting married to each other reduces especially with informed people.
Improving the quality of care for these SCD patients must be a priority for all.
You can read up the first part of this article here.
4 responses to “To love and to perish, the sickle cell disease conundrum (II)”
Wow! This was an amazing article, as it poignantly captures the duality of life experienced by sickle cell disease (SCD) patients. I love that you took time to explain what it means, it’s Pathophysiology and how to manage or avoid it. I support that it should be made a law for aspiring couples to get tested and know their Genotypes in order to be on a safe path. Cheers!
That would be an effective way to fight such among couples however we can also explore some other options of grassroot campaigns to let those in villages know the implications of not knowing their genotypes and what the implication can be on them and their future children. Thanks a lot for your input on this.
Thanks chief for this well-detailed and awe-sinspiring piece, which did justice to everything one needs to know about the SCD, some factors that contribute to its incidence and practical ways of reducing it.
Special thanks for mentioning the Olive Sickle Cell Initiative. On behalf of the team, we’re grateful
Your team is doing a great work, and we are impressed.